Friday, January 8, 2016

New Year's Eve Through MS Eyes

Back in in the days before I got jumped by MS I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year with a lusty gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five soirées and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall, for though I forever seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.

I suppose my fondness for the holiday had its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our long in the tooth black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to tenement than high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.

Though I was maybe only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy but well-worn metal pots and pans, and, using big spoons as drumsticks, burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and somehow defiantly low rent cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.

When I got older, as a young adult I fully embrace the revelry of the holiday. I had quite a few memorable New Year’s Eves, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.

Now, nearly 13 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.

Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by good booze and the magic of the night, all could convince themselves that the coming days held good fortune that would far eclipse those which now belonged to history.

For the healthy masses, New Year’s Eve encapsulates the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate one’s actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.

And there I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time. My strange and thus far indecipherable mix of endocrine dysfunctions, creeping paralysis, and hideously painful deteriorating joints (courtesy avascular necrosis, a very rare side effect of the intravenous steroids once used to try to beat back the creeping paralysis) has become more intractable than ever, defying all efforts, mainstream and alternative alike, to slow things down.

Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. I continue to fight my disease on all fronts, employing a dizzying array of supplements and medicines to lessen the impact of some symptoms, and undergoing treatments both holistic and traditional at which my condition seems simply to sneer. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. My mantra of “staying in the moment” does still help to keep me grounded, but there are also times when the moment just sucks, no two ways about it. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.

New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void.

Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.

And even as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his voice, “Happy New Year’s!”…

Here's some wonderful old footage of a Guy Lombardo ushering in New Year's Eve in 1957, a few years before my time…

35 comments:

I identify with SO much that you write ("gripping a fork, or struggling into a sweater") and do not envy you the progression of your disease (there is always something worse, eh?)...but know that I DO envy that you rang in the year with a loved one, someone that is standing by you with love. I also admire your indomitable spirit. It's inspirational. Keep on truckin', right? Thank you, as always, for your words.

Hi Sue, funny, I don't envy me my progression either. I am indeed grateful to have someone who loves me very much that has stood by me through all of these tough years. It's scary to imagine where I'd be without Karen.

Thanks for commenting, and I'm sorry that you can identify with even one word of my subject matter. Way too many of us dealing with this damn thing. You keep on trucking too, and happy new year!…

I feel so blessed to have come across your writings. I cannot express how deeply they touch me and how very much I relate to them. I often forward them to some of my loved ones and say, "Here! Please read this! This is EXACTLY how I feel! This is EXACTLY what I have been going thru!"

So, thank you, dear Mark, for expressing and writing so eloquently and sharing with all of us. Theresa

Hey Theresa, well, you're very welcome. As I said to Sue, above, it's just a shame that there are so many who can relate to my words. It's very gratifying to know that in some small way I'm helping people deal with the MS struggle, but at the same time it breaks my heart to know how many of us are out there. And how little understood we are…

Thanks so much for your kind words, they are tremendously appreciated.

Beautifully expressed, as usual.And yes, Sue W put her finger on the most important aspect of celebrating "the moment" that 2016 was born, having a loved one by your side. If all that matters in this life and beyond, is love, you, Marc, hit the jackpot.Love ya,Hilda

Hi Hilda, yes, I'm incredibly fortunate to be loved, even through these most difficult times. As I know you are far too aware, this disease quite often cleaves even the most seemingly bonded couples. Was just talking to one of the nurses at my neurologist's office, who told me that way more than 50% of the patients there have had their spouses or significant others leave them after diagnosis. Although I find this detestable, there is a part of me that understands, if only because I am so aware of the imperfections inherent in human beings. More and more we live in a completely narcissistic society, one in which promises such as "in sickness and in health" have no meaning. Way too often, selfishness rules the day, and sparing oneself any emotional pain, even at the expense of others, has somehow become, if not quite acceptable, then very much tolerated.

Marc, This past New Years Eve, my wife and I celebrated our 40th NYE together, we watched old movies (Niagara, Rear Window and the likes) ate a little and and wished for better days ahead. NYE was day 101 in the hospital with her with leukemia and day ??? with me sitting in my wheelchair (due to MS). I DO miss the 'old days'!

It sounds like you and your spouse are very lucky to have each other. I'm so sorry that your wife's leukemia has kept her in the hospital for so long, and I'm hoping that at least she's making progress towards remission. I'm sure your presence at the side of her bed is the best medicine she can get.

In my opinion, watching Rear Window is a terrific way to spend New Year's Eve. They certainly don't come any better.

Marc, as the song says "You don't know what you've got till it's gone." Many of us had similar thoughts on New Year's Eve..including me...thank you for putting it into such eloquent (as always) words. And as you said there is always hope and although you cannot be the next Mick Jagger, being the next Phillip Roth is still within your grasp. Keep up the fight and the hope...and miracles do happen! Wishing you a good 2016!

Yup, Joni Mitchell nailed it in that song, "Big Yellow Taxi". They paved paradise and put up a parking lot…

I somehow doubt that I'll be the next Philip Roth anytime soon, at this point I'd be very happy just going back to being plain old Marc, the one with the functioning nervous system. Or even just a nervous system that stops self-destructing…

Thanks for your warm thoughts, and here's to a great 2016 for all of us!

Hi, it is incredibly heartening to know that my words have had some positive impact on my fellow members in this club that none of us wanted to join. As far as my being a treasure, let's just say that all that glitters is not gold… I just try to tell it like it is, to borrow a phrase from Howard Cosell, especially since it seems like there are so many who try to paint a happy face on the ugliness that is Multiple Sclerosis. I say let them see the ugliness, that's the only way we'll ever get a cure…

Hey Charlie, sorry I've been so out of touch. Yeah, I'm still kicking, so to speak. Not quite like the Rockettes, but then again, I don't think that even in my best days I could've kept up with that crew.

Happy new year, Charlie, and I will certainly keep my eyes on all there is to be grateful for. Thanks for chiming in.

Thanks for putting it into words. We spent New Year's Eve with a few close friends and their kids. I had no pre-conceived idea as to how I'd react when the ball dropped. I was surprised when the emotion I felt was despair; the rest of the night had been pretty enjoyable. Ah, to reminisce-never know whether it will be wonderful or a tragic reminder of what we have lost. Last night my 10 year old started singing, "Who can it be knocking at my door." I don't how she knew that but it prompted me to start searching for other Men At Work songs from my mid-late teen years, then Devo and Joan Jett. For a few moments I was pretty sure I could dance like I was 16 again. Keep writing Marc- good or ugly. Your truth is our truth.

Yes, looking back is a double-edged sword. It's nice to be able to take comfort in memories of what was, but treacherous when comparing those days to the "now".

Sounds like I'm just a few years older than you, and I fondly remember going to a Joan Jett show in 1981, when she had yet to achieve big time fame and was still something of a local New York act. The show was in a small club in Queens, and I was right up against the front of the stage. When the set was over I leapt up and grabbed the set list, and almost got stomped on by one of the roadies.

Funny, until I read your comment I hadn't thought of that incident in several decades…

Wishing you a happy new year, and hoping that you still don't give a damn about your bad reputation…

Sorry that I didn't sign my name to this. I think we are about the same age. I just turned 50 (gulp!). It is not impossible that we were in the same run-down clubs at the same time. It wasn't my scene, but some of my friends were on the fringe of society and they used to drag me, far out of my comfort zone, to places like CBGB's for a throughly frightening and enjoyable time.

Marc, I thank you for articulately sharing your experience, and doing so in such a honest,emotionally charged and straight forward way.you lay it on the line and pull no punches. As a PWSPMS you speak truths that I find difficult to face. I pride myself on my "healthy denial" which keeps me going. It works for me but I too am confronted daily with the insidious creep in physical and functional decline. I am thankful for the support of my wife. I am thankful that you,too have your wife at your side. I am not a fan of the hoopla surrounding NYE but I just love how you framed your piece in this context. Thank you for your strength and gift of speaking your truth and enabling those like me to benefit. There is peace in the present moment.I wish you many peaceful present moments.

Hi Scott, I think we all utilize the "healthy denial" trick, at least to some degree. Trying to stay in the present is key, after all the past is but a dream in the future is unwritten. I do try my best to right with the utmost honesty, as sugarcoating the situation wouldn't, I think, be of benefit to anybody. I realize that my blog can be frightening for some, especially those newly diagnosed, but of course people are free to look away. For those of us fully in the grip of the disease, though, I think it's important to know that none of us are alone in the struggle. Even though, of course, each of us must fight our own individual battle.

Thanks for your comment, and here's hoping that 2016 will find your MS deciding to be gentle…

NYE was my 22nd wedding anniversary. Like you, I greatly appreciate the strength and love I receive from my spouse. Relationship is what it's all about. None of us are likely to do great things; our legacy will be the lives we've touched. Think of all the people you've influenced, in real life and through this blog. Keep reaching out.

Hi Lisa, thank you for your very lovely words. I do hope I've been able to do some good these last seven years since Wheelchair Kamikaze came into existence. I do hope that when all is said and done, and the final reckoning is made, I will be found to have done more good than bad. Hope you had a wonderful anniversary, it must've been a blast to get married on New Year's Eve. Did you say "I do" at midnight?

Marc, I know that sometimes you read Ms Blogspot from Barts And the London. They need our help, because they are crowfounding project Charcot2, trying to discover the link between Ebv and MS and they need our donations. I hope you can use your blog to spread this information. I think this is a very important research, we can't wait that pharma find the cause of MS. We need courageous researchers and new concepts (ok, the link between virus and MS in not new anyway)

Hi, yes, I am planning on featuring the crowd funding efforts of the Barts and the London crew. Was disappointed that there initial Charcot project was not a success, here's hoping that the second try will be the charm…

Hi Mark,great to knows that you are planning something like this. Was disappointed about Charcot1 result as well, but citing from their blog: "'Only those who dare to fail greatly can ever achieve greatly.' - Robert F. Kennedy"Maybe Charcot1 was not completely negative, MD leak out something in this sense.RegardsSteve

Hi Mark:Have you seen the latest study by John Hopkins in Neurology magazine? As usual, their study is for relapsing-remitting MS.It is about effect of increased level of Vit. D3. When level of d3 in blood is over 50, decease activity decreases or stops according to said study.Thank you and wishing you an important decrease in desease symptoms and hopefully new revolutionary treatments for all of us.

We keep hearing of these new treatments but I suspect that they will come too late for many of us. Trying to stay in the present is so difficult when you dread your future, isn't it? Most of the time I succeed in blocking those thoughts, but not always. Thanks for giving me a safe place to air them.

Yes, this treatment (HSCT) is exciting, but it's not really new. I've written several blog posts about this, some quite extensive, which you can access by typing "HSCT" into the search box on the upper left-hand corner of this page…

Ah damn. Apologies for the excitement - it was news to me. Still, the results were staggering for those considered suitable for this type of therapy. I do hope everyone who might benefit gets to hear of it.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...